Wild Beasts No More

Wild Beasts No More
When word got out about a proposed law that promotes reintegrating mentally ill patients into society, the media and public went crazy at the thought of opening the asylum doors. With advances in psychiatric medicine, however, many residents of the nation's mental health hospitals are ready and willing to go home — and have been waiting for decades.
By Manal el-Jesri
ABASSIYA!” Say the word as you hold your hand near your head and shake it a little and every Egyptian —and many Arabs, thanks to the lore of Egyptian film — will know what you are talking about: Crazy. Insane. Not all there. Unbalanced. That’s what it means to say that someone is “Abassiya” as you shake your hand near your head.

In short, it is the popular —if abusive and insensitive —way we have of referring to the mentally ill.

Abassiya. “What’s in a name,” Shakespeare once asked. Abbasiya is not an adjective. It is a Cairo district that used to be located on the periphery of the capital. It gained its infamy when the Egyptian government, under British occupation, chose it to house the first modern hospital for the mentally ill back in 1883. Today, Abassiya lies in the heart of the capital, housing over 1,500 mentally ill patients in its Mental Health Hospital, many of whom have been conveniently forgotten by their families.

Although we live in the twenty-first century, it is still eib (shameful) for people to know that you have a mental patient in the family.

Over the course of visits in recent months, Egypt Today has had the opportunity to meet patients who have been in Abassiya for 20 years or more. They all voiced their hopes of becoming free to see the outside world again one day. Sayyed, who has been incarcerated at Abassiya for the past 20 years, says, “I am suffocating. I want to get my life back. I want to work, to do something useful. If only my brother would get it into his head to let me out.”

Last July, many were shaken out of their indifference to the plight of the forgotten residents of mental hospitals when daily newspapers reported the death of Ne’ma Siddiq, an octogenarian who had been admitted to Abassiya before the July revolution of 1952. For 56 years, Ne’ma lived in Abassiya.

“When she died, nobody came to claim her. She had not been on any psychiatric medication for 20 years. She just had nowhere else to go,” says Dr. Nasser Loza, secretary-general of the Ministry of Health’s Mental Health Secretariat and a prominent Cairo physician who runs a top private-sector addiction clinic. Dr. Loza and his colleagues at the Ministry of Health have worked for the past three years to develop a new Mental Health Act to address many of the problems surrounding the issue of mental illness and mental hospitals.

The new act, which is currently being discussed by the Health Committee of the People’s Assembly, should provide alternatives to the problem of patients being left inside mental hospitals for years simply because there is nowhere else for them to go. It will replace an old mental health law, law 141 for the year 1944, which begins with the words “We the Sovereign King of Egypt” and addresses now-defunct entities such as the mixed-courts (which tried non-criminal commercial and civil cases involving Egyptians and foreigners).

Although it has created controversy in the media and among some members of the community of psychiatric professionals, the new act seems to be a step in the right direction. Written by the Ministry of Health, it has the support of the Egyptian Initiative for Personal Rights (EIPR), a leading independent human rights NGO.

With government, medical professionals and civil society all on the same page for a change, you could be forgiven for asking what the controversy is all about. Sadly, it’s in you and me, in a society that doesn’t exactly look forward to having recently released “mental patients” as neighbors, and in a government that has so far failed to give the state mental health system the resources it needs to treat, rather than to incarcerate.

Restoring Their Rights

The Mental Health Hospital in Abassiya is only one of several public-sector psychiatric hospitals, including El-Khanka, Almaza and Helwan, to name only a few in the Greater Cairo Area alone. It was to Abassiya that we headed because it is the first and largest mental health hospital in Egypt —and also because it has come to be synonymous with the issue of mental health, courtesy of the name association.

To say that Abassiya was the first mental health hospital in Egypt is not exactly true. According to the special study prepared by the EIPR about the new mental health bill, Sultan Qalawun Hospital had its own mental health department back in the fourteenth century. The Sultan paid this department special attention and often visited its patients.

“The hospital provided mental health care services to the poor, and the mentally ill were only isolated from the rest of the patients in exceptional cases,” the study notes. In fact, it was the Arab physician and polymath Abu Bakr Al-Razi who, in the ninth century, first recognized mental illness as an ailment stemming in the brain. Until the fourteen and fifteenth centuries, the mentally ill were not stigmatized, but were treated alongside patients with physical ailments.

The practice of segregating mental health patients from society in high-security hospitals of their own is now being reviewed all over the world. According to the EIPR study, “The explanatory memorandum accompanying the bill [Dr. Loza’s new Mental Health Act] states that ‘The concept of treatment for mental disorders has changed to focus essentially on the treatment of the patient and his/her reintegration in society, and to help him/her lead a productive life; and is no longer targeting his/her exclusion and isolation in a mental institution for long periods of time, as is the case in the current law’.”

Dr. Loza believes the old law was a good one for its time, explaining, “It looked essentially at how people were admitted into hospitals, because in 1944 there were no treatments in psychiatry, so people were expected to stay there for years and years. The old law did not really look at the length of stay. The new legislation sets points in time where if someone is going to hospital involuntarily, then they will be reviewed again after one month, then after three months and then after six months to make sure people are not being forgotten there for years. It also looks at the way patients are admitted and at issues of consent and the right to go out for a cup of coffee or to a lawyer if they need to. The right to appeal is very important.”

The new law, according to Dr. Loza, defines the rights of patients, especially in relationship to the power the treating physicians hold over them.

“If you were to suffer a psychological problem and I was your treating doctor, I would propose treatment, but at the end of the day it is your decision if you will take it or not. You also have the right to choose your doctor,” Dr. Loza explains. The new law will also give patients the right to discuss the treatment, except in the few cases where they represent a threat to themselves or to others. “Even then, there is a procedure that must be followed. I cannot do it alone, and I must get another doctor from outside the institution.”

The law is an enabling law, the secretary-general believes. “It enables doctors in the case there is high risk, and it enables patients who are well enough to leave or to go out for a while and come back. It is a liberal law that sees the mental patient as merely a patient, not a wild beast.”

While progressive for its time, the old law talks about the “arrest” of mental patients, a fact that has helped ingrain the stigma of being a mental patient or having a mental patient in the family. It was not always this way, Dr. Loza believes.

“We were a very liberal society. We believed that the gates of heaven were open to [mental patients]. People loved them and gave them money,” he says. Today, mental patients are abused, the physician says, “and not just inside hospitals. They are abused in the streets and inside police stations. It is an attitude. Something more needs to be done.”

No Place to Go

According to Dr. Loza, 60 percent of all beds in the public psychiatric hospital system are taken up by long-stay patients. Dr. Alaa Eddin Soliman, the chairman of the Mental Health Hospital of Abassiya, says these patients are institutionalized not because they need urgent care, but because there is nowhere else for them to go.

“This stratum is in need of a social solution, not a medical one. Here in Abassiya, 25 percent of all beds are blocked by these long-stay patients. Of over 1,500 occupied beds, 25 percent must be cleared to make space for more urgent cases,” Dr. Soliman says. “These patients want to go out, and we want to release them, but if we do release them we will be releasing them onto the streets, so we just keep them. These are patients who either have no living family members or whose family members have rejected them. They have lost their connections with society.”

These patients, eligible for release should the new law pass, need a place to go, and Dr. Loza says the ministry is now looking into building halfway homes as a key step in the reintegration process.

But it is this clause in the new law that first caused much of the controversy in the media. The stigma against mental patients was never as clear as when newspapers and websites talked about the ‘unleashing of the insane’ onto the streets. Why is the media so resistant to the idea of cured patients going back to society, to their lives and to their families?

“The new law does not limit the time a patient stays in the hospital, if his or her stay is warranted. Even the old law allows an involuntary patient reassessment after one, three then five years. But back in 1944, there was no cure for 70 to 80 percent of all mental illnesses. Medicine is not the same, and psychiatric medicine has come a long way,” says Dr. Loza. “Today, 70 percent of all patients stabilize after treatment and can return to their lives. Just like diabetics and hypertensive patients, they are fine as long as they take their medication. The new law will protect the patients whose situation could stabilize after an average of six weeks from being left inside institutions for years.”

People, according to Dr. Soliman, are ignorant of the nature of mental illness. “They think that once a person is sick, it is over so they must forget about them. Out of ignorance comes fear. And the ignorance was supported by media messages that fed it even more, in addition to the superstitions and wrong-headed beliefs.”

The ignorance must be addressed, and so must the dilemma of long-stay patients. But in the end, everyone must be made aware of a very important issue: Mental institutions are not homes for the homeless.

“We are a hospital. Our job is to offer treatment.” Dr. Soliman says. “Ours is not a social institution. The social services system must be made to shoulder this burden, or at least some of it.”

Insensitive Solution

Dr. Tarek Okasha, a professor of psychiatry at Ain Shams University and executive committee member and scientific meetings secretary of the World Psychiatric Association, points out that a new mental health law is something his father — the renowned professor Dr. Ahmed Okasha (the chairman of the Egyptian Psychiatric Association and the World Psychiatric Association) — has called for since the 1970s.

“Ever since the huge leaps in psychiatric medicine, the concept has been to treat the patients and not to house them. Dr. [Ahmed] Okasha has tried to submit a new law four times in the past, the last one being three years ago,” the younger Dr. Okasha says.

Dr. Tarek Okasha says the new law is clearly needed. “A mental health act is required because we are the only branch in medicine where, in very limited circumstances, you can treat patients involuntarily,” he notes. “This makes it somewhat special.”

Yet each time Dr. Okasha senior submitted the law, discussion of the proposal was postponed. This time, the proposed law has made it to the discussion table, but it is a law submitted by the Ministry of Health, not by the Egyptian Psychiatric Association.

Although the association is in favor of many of the clauses of the proposed bill, it has some reservations. “The problem is that the new law is a cut-and-paste of the UK mental health act,” Dr. Tarek Okasha notes. “You cannot apply a law from one country to a different one with different cultural, social and religious values and individual beliefs.”

For instance, he explains, the new law gives social workers the right to approve the admission of a patient. “We do not have an institute graduating social workers specialized in psychology. So what do we do? In a country with a population of 80 million, we have only 250 clinical psychologists and 1,500 psychiatric nurses. Who is going to oversee that the law is applied? You can give us a wonderful law, but then we cannot apply it.”

Here in Egypt, he continues, we have very limited funds available for the mental health system. Dr. Okasha argues that although it is good to want everything, a new law must try to solve actual problems by targeting them. The most urgent issue is the admission of patients in danger of harming themselves or others, and this is what the law should focus on, he says.

“Who is going to be on the committee to review the case of this patient a few months on after the manic or the depressive episode has passed?” he asks. “The chairman of the review board — according to the new law — is the minister of health. How can someone who provides the service be asked to monitor himself?”

Psychiatrists like Dr. Okasha who are not affiliated with the Ministry of Health have also voiced concerns over the penal clauses of the new law.

“It says that if a psychiatrist forges a report, he can be imprisoned or fined. But what do you do when a surgeon forgets a towel inside a patient? Why is the psychiatrist criminalized, whereas other physicians are dealt with via the Medical Syndicate?” Dr. Okasha points out. If such a clause remains in the law, he claims, we would be adding to the problem of stigmatization instead of solving it. “We will have a new stigma — that of being a psychiatrist.”

Dr. Okasha also points out that the new law does not take into consideration the cultural dimension.

“The law must be culturally sensitive. Here in Egypt, a patient’s family or legal guardian is very important. When a 30-year-old’s father orders him to go into hospital because he needs it, is this voluntary or involuntary? When you get a female patient exhibiting manic episodes and promiscuous sexual behavior, do we allow the family to kill her because she has tarnished the family’s name, or do we treat her?” he notes. “Cultural beliefs are very important. In England, where the law originates, the self is very important. The individual is more important than the family. This is why you have to be careful when you import a law.”

Although Dr. Okasha has some reservations, he believes both his association and the Ministry of Health are on the same side.

“The most important thing is to protect the rights of the psychiatric patient,” he says. “The new law is a good step forward, but it still needs a lot of work. Penalties must be taken out, and those who commit crimes must be dealt with in court. The law also needs to be adapted to fit us. In England, they have halfway homes and rehabilitation facilities, a whole healthcare system that we lack. Here, when you release a patient who has been rejected by his family, where will he go? This question has to be answered first.”

Civil Society On Board

The EIPR has backed Dr. Loza’s Mental Health Act, a very rare instance of the NGO backing a government initiative instead of demanding the government take action on an issue.

Dr. Ragia Shawky, EIPR’s health and discrimination project officer, was the primary editor of the study on the new act. She believes the draft to be of the utmost importance.

“The very concept of human rights has changed. The standards for medical practice have changed as well,” she says. “The old law was good for its time because it had clauses that protected the will of the patient. The new draft tries to raise the bar, setting standards that are in accordance with current human and scientific principles.”

From the human rights perspective, a psychiatric patient is very fragile, Dr. Shawky explains. The medications he or she is given can strip them of their power. And even more sensitive is the involuntarily admitted patient. “The power of the attending psychiatrist is great over patients. There must be very specific criteria, and constant supervision is imperative,” Dr. Shawky says. “The draft addresses such issues, trying to put a stop to the abuse and the violations against patients, be it physical abuse or exploitation.”

Shawky is a member of a committee put together two years ago by the general secretariat to visit mental health hospitals and collect the complaints of patients and their families. “Up to that point, no entity existed to collect these complaints, and patients did not even know they could complain,” she says. “Most of the complaints we get are against the nursing, because these are the care-providers who are constantly in contact with patients. Other patients complain that they are better and want to be released but are not allowed to.”

Considering that the draft law will try to address a number of issues to ensure that the rights of patients are not abused, the human rights activist is surprised at the controversy surrounding the new draft. “Why this rejection? Why are the doctors against the idea of a review board, for example? I can tell you why I think they are resisting: It is because for 70 years there was no law, and they got used to it. I mean the law was there, but it was so rigid that it was overlooked. Of course when you install a new law there will be resistance.”

And for a law to be respected, it must have penalties.

“There are some crimes that must be punishable by imprisonment, like harming a patient or forging a report to keep a patient in hospital against their will when it is not required. There are some crimes or transgressions that are specific to psychiatry, and so the general penal law cannot be applied to them,” Dr. Shawky says. “The thing is that physicians are loud, they can get themselves heard. They practice medicine in a patriarchal way. If they applied their own code of ethics, they would not be so shocked by the clauses of the draft bill. Physicians do not tell you what your diagnosis is, which is against their code of ethics. We, who have no mental illnesses, are treated like this by our physicians, and we are so grateful to them that we do not even ask. So what about the very fragile mental patients? There must be a way to protect these patients’ rights.”

Shawky is also very surprised and angered by the claims that the new draft lacks cultural sensitivity.

“Is our mental patient not deserving of protection like the English mental patient? For centuries, we have taken all our medical knowledge from the West, after we exported medicine and sciences during the age of Islamic Renaissance. Should we go back to herbal medicine because it is more culturally sensitive? When they talk about the role of the family, have they not seen the rich families who keep their patient in a hospital for years in order to get their hands on their inheritance? It happens. I think they just want to stir people’s tribal feelings by saying such nonsense.”

Although the EIPR supports the Mental Health Act, Dr. Shawky points out that there are a few areas where it can be improved. She also notes that it should be a part of a comprehensive policy that addresses the psychiatric problems before they become complex.

According to Dr. Shawky, general practitioners are not trained to discover psychiatric problems. In addition, no psychiatric services are available in the primary care health units, a problem that Dr. Okasha also pointed out.

“Being admitted into a psychiatric hospital is the third phase. Patients should have passed through two different levels of care before, but this does not happen because of the lack of service providers,” Dr. Shawky says. “The hospital means seclusion and incarceration. It is difficult to integrate the patient back into society. A whole system must be put in place and shored up. Primary care physicians must be trained. It is wrong to treat everybody in a hospital.”

The human rights expert is also worried that the new law leaves out private clinics. “It is uncalled for. We were hoping a Mental Health Act would protect all the patients suffering from mental illness. It is a mental health not an incarceration act,” she says. “Some involuntary treatments are given in clinics, after which patients become vulnerable and suggestible. Such patients are susceptible to abuse.”

Dr. Shawky hopes the new law will be accompanied by more awareness. “The way Egyptian media has dealt with the topic is shameful. They have used words like ‘unleashing’ and ‘releasing onto the streets,’ as if mental patients were animals. They have called them a security hazard. But all the law does is protect the rights of those citizens who deserve to be part of society.

“There is fear, terror, stigmatization and discrimination against them by the man on the street because of the stereotypes in our heads,” she continues. “If we are so scared, why not be scared of the 1.5 million patients who are out on the streets and who were never treated or admitted. We need to treat those, and we need to make room for them in the hospitals. They just say ‘Alhamdulillah, society is safe because all the crazy people are safely inside hospitals’.”

Crazy or Corrupt?

Dr. El-Sayyed Qotb, the hospital director, says that the last time the staff counted, 1,150 of the patients had spent between one and 30 years inside the hospital. He is surprised at those against the proposed penalties in the law, because he believes if tough penalties existed, doctors would not have allowed the current situation to develop. He believes it is negligence or even foul play that has exacerbated the situation of long-stay patients in the hospital.

“This is a hospital. It is not a home. It means that a patient comes in, gets treated and leaves. Why is it that some patients have been here for decades? Only one percent of the patients have no families,” Dr. Qotb notes. “Does this mean that all the families are bad, or is it a situation where the culprits are the staff, doctors, nurses and administrators? They must be gaining something out of this. There is corruption going on. We can see the transgressions clearly. This calls for severe penalties.”

When plans regarding the new law were first announced, people thought the Ministry of Health was going to put a limit of six months on hospital stays, after which a patient will be discharged even if it is onto the streets.

“We are not going to throw anyone out,” Dr. Qotb explains. “But with modern medication, within six weeks the most active symptoms abate in the most severe conditions. This leaves us two and a half months of rehabilitation. Once the patient is ready to be discharged, we have three ways to keep monitoring him or her. We have an outpatient clinic, we also have a day center where patients can come and stay for the duration of the day, every day. The third option is to send doctors to patients’ homes to check up and dispense treatment for free. Should the patient need to be re-admitted, then he needs to be re-admitted.”

Voices in Your Head

As Dr. Soliman pointed out, the draft mental health act has made people talk, which gives responsible media an opportunity to dispel ignorance and to educate. It also gives patients like Nabila, Madiha, Hanaa, Aisha, Sayyed, Ihab and Hussein — all patients Egypt Today had the opportunity to meet at Abassiya —the chance to be heard.

All the patients we spoke to were not manic. They were calm, quiet and made a lot of sense. They spoke from the heart, which is why their words resonated. They all wanted to be out, with the exception of Ihab, who believes both inside and outside are the same. Under the principles of universal human rights, only patients in danger of hurting themselves or others are to be kept in a mental hospital against their will. According to the EIPR study, “Research showed that the therapeutic impact of the mental asylums was minimal and that, in fact, the prolonged isolation of patients sometimes exacerbated their illness or led to new problems and disabilities.”

The study also cites the example of countries such as Italy, where “a 1978 act to reform mental health care demanded the closure of mental hospitals, replacing them with a comprehensive network of community care services. A number of developed and developing countries have shifted from dependence on the asylum system of exclusion and isolation to providing treatment within the community and at home, through outpatient clinics, general hospitals, emergency departments, mobile medical services, daycare centers and support for families and caregivers.”

But as Dr. Okasha asks: Where are the community centers and halfway houses that will take in the discharged patients who are ready for rehabilitation and reintegration into society?

“It is heaven, of course, to have a mental health act. But will you apply it? Will you have the means to apply it?” he says. “We have this ongoing problem in Egypt that we have no funds, no space and no trained personnel.”

This is indeed the case. The EIPR study notes, “In sum, all studies and reports agree that Egypt is extremely deficient in financial and human resources allocated to mental health, and thus the provision of mental health care services falls far short. Mental health hospitals continue to be the main providers of most mental health care services, which are thereby restricted to big cities. Primary health care services do not include mental health care, and primary care practitioners do not have the knowledge to refer those in need to mental health professionals or to provide essential psychiatric medications. There is also weak collaboration between the official health sector and other community sectors, including civil society organizations.”

Dr. Loza is ready for the challenge. He doesn’t seem daunted by all the negativity, saying he believes that a mental health act is only the first step towards change. “The law is only the beginning,” he says. “Beyond the law is awareness, training, application. Funding will always be an issue, and it is a good idea to have more money. We have been loud and we were given more money, but part of the law is to create a separate fund for mental health.”

Nobody knows when the law will be approved, but once it is, it will be a step towards actively changing the stigma mental patients have shouldered for too long.

And please, the next time someone says Abassiya and shakes his or her hand, pretend you do not understand

FINDING THEIR VOICES

Kept in isolation for years, the patients of mental health hospitals have become invisible and voiceless in our society. Had they voices, this is what they would say:
Nabila

Should it pass, the new Mental Health Act may solve the problem of patients such as Nabila, who has been a resident at Abassiya for the past 22 years. Now in her 40s, Nabila comes to meet us outside the work-therapy room. She is panting as she looks for a place to rest. The hospital is huge and she was told to come find us here, so she came fast. It is a chance for her to get her story out. Nabila is all smiles, although her story is a bitter one.

“My aunt brought me here, but now my brother is keeping me inside,” she says. “He is afraid for me, but I am very upset with him. I will never forgive him. He won’t even let me out for [a] 15 day [pass]. I am imprisoned here. I need a change of air.”

Nabila’s hometown is Sharqiyya. She likes to tell her story from the very beginning, on that fateful day 21 years ago when she had an accident and ended in up in a coma inside a Sharqiyya Hospital.

“I woke up to find myself in a tattered galabiyya. I only had one slipper on. A woman working in the hospital recognized me and gave me some money to get home. When I got home, the landlady told me that my husband had left all my furniture in my mother’s room. He had left me. The next day my aunt and my sister brought me here. I got electric[-shock] therapy and I became fine. I take very little medication now,” Nabila says. “My relatives keep telling me they are afraid for me. They are afraid men will take advantage of me if I got out. I keep begging them to take me back. I beg my mother to take me, and my brother too. They visit me twice a year. My sister has not been to see me in some time. I called her the other day, but she said she was sick and getting injections so she could not come. I would like to get out, but I do not have an ID card. I cannot live on my own. I would be too afraid on my own.”

Article 14 of law 141 for 1944 allows a patient’s family to choose to remand a relative to the custody of mental hospital, which is why people like Nabila are institutionalized for years without much hope of one day being released:

Article 14: If the institutionalized patient is cured, the hospital director shall immediately send a registered letter to the person who admitted the patient to the hospital, the patient’s caretakers or any other party assigned by the patient, asking this person to collect the patient within seven days. If any of the aforementioned refuses to collect the patient, the patient shall be discharged immediately. In such cases, the government shall bear the expense of transferring the discharged, poor patient from the governmental hospital to anywhere within Egypt. In all cases, the hospital shall notify the administrative authority with which the discharged person is affiliated. If the patient is no longer in the condition stipulated in article 4, the hospital director shall end institutionalization. In such a case, the patient or any of the patient’s guardians or caretakers may ask for the patient to stay until fully treated. [Emphasis added]



Madiha

The stigma cuts across classes. Madiha, who has been inside the Abassiya hospital for 15 years, comes from a wealthy background. She remembers that her mother owned a building on Qasr El-Aini Street. Her brother is an officer who works in a distant governorate.

“I am very sad. He does not visit me, except when he is here on leave. He refuses to allow me out. I am not going to speak to him. But even if they all want me to get out, I will never leave without Nabila. She is like a sister to me. We two are inseparable. I want to get out and live with her in my apartment. We will take care of each other. Heya habibti.”



Sayyed

Sayyed is 56, but looks much older. He seems like he has the weight of the world on his shoulders. His one dream is to get out and start working again:

“I have been here for about 20 years. My brother brought me here. I was a little ill, we were having problems at home. He got two nurses and they took me away. I got better here. A doctor made him take me home. It was about two years ago. He let me stay for two weeks, and then told me we had to come here for the medication. Suddenly, I found him telling them at the gates that he wanted me kept here. He paid LE 260 and left. I want to work. I do wood varnishing. I do not understand why he insists on keeping me here. I take very little psychiatric medication. I am being treated for my ulcer and my chest problem.

“My brother is staying in our family home. It is small. He is married now and has five kids. When I stayed with him for two weeks, he made me sleep on the lower bunk of his children’s bed. It was not so bad. I did not mind. His wife is a very kind woman. She gave me my allowance every day. It was money I made singing in the theater here.